Please read my latest piece in the Washington Post:
I think a lot about memory. As I get older I remember details or the way something felt, rather than events. I can’t remember the name of my second grade teacher but I remember exactly what the hooks looked like where we hung our jackets. It was a small hallway leading into our classroom, with hooks on either side. There was a window at one end and when the sun would shine in you could see all the dust moving in the air. I liked that little room, the wood of the floor worn down by many years of kids like me, the hooks with our names written underneath, a spot for everyone. The only thing I really remember about that school is the coat room and it’s hooks, and the way the sun would slice into the space lighting up a small section of busy dust .
Memory is all about connections, fragments of days and events stick around in my head, some feel random like the coat room, some are sweet like the memory of the day Colin proposed or the days when we met our kids. Some are still very sharp and real like the hours we spent in waiting rooms of doctors as we slowly unraveled Mae’s diagnosis of Autism. I can remember both the feeling and the details of these days with incredible clarity; the emotion of them accompanies the home movie as it plays in my head. Sometimes it can be like reliving the experience, both the happy tears and the sad ones.
I am always interested in how memory affects behavior. My sons don’t like getting in trouble because they remember how rotten they feel when they have done something they shouldn’t. They are motivated to make choices that keep them out of trouble by the memory of a feeling. I can’t really eat sugar any more, not because I don’t like it but because I remember that it makes me feel awful. When I am struggling to motivate myself to go running or sit for meditation I remind myself how good it felt the day before. Memory is a powerful force in everything I do.
I am always interested in the things Mae remembers. Does she remember the feeling of the day we adopted her or of being on the airplane? Does she remember the feeling of all of the operations and doctors visits that filled our days when we first got home from China? I remember the sadness, exhaustion, and helplessness of them more than I remember the names of the various doctors and all their grim reports. I always wonder if she remembers them at all.
She has a very clear memory for the things that matter to her, she always knows where her favorite snacks are, and a stash of plastic for her to play with. She remembers where we keep her swimsuit and is more likely to find the ID card for the pool than I am. She pays close attention to the things she cares about, and ignores all the rest. She is my child and I think that she is brilliant; one of the ways I convince other people of this is using her memory as an example. She can’t speak but her very good memory is proof that she can learn, and I am always quick to point it out.
When you live with someone whose brain is largely a mystery, memory is proof of connections she can’t verbalize but that clearly exist. As I age, my memory is changing. It requires more effort to hold on to the details. I feel like my brain has become one of those vests that people use for fly fishing. It is filled with pockets of information, song lyrics, old phone numbers, directions to homes I don’t live in anymore, passages from books long since passed on to friends. My sons are always interested in my memories of life when I was their age, what was it like for me to be 11 or 12, they are often frustrated when I describe the memory of a feeling instead of telling a story.
Most interestingly is how we can change the role that memories play. I remember that first crazy year after Mae’s diagnosis as a series of events, but also now in retrospect as my own personal endless Ironman. My memories of having survived it are something I call on frequently to remind myself that nothing is impossible. I have started to think of my memories like money in the bank, I can call on them when needed to provide perspective, motivation or to save me from myself. I have also learned through my meditation practice that I have a tendency to get stuck in my own memories. I have learned by watching my own mind that I can replay or relive events long since over and still feel the irritation or sadness that accompanied them. It is a habit that does not serve me well. Why not revisit the happy memories instead of the ones that make my blood boil? Your memory can keep you from making the same mistakes twice and encourage you to repeat things that have worked in the past, but the best idea is to invest yourself and your attention in your present, because for better or worse that is where your life is actually happening.
Recently, I attended a meeting of our local school board. They were getting together to discuss a projected budgetary shortfall and, as a new member of the school community, I am interested in learning more about how it all works. I introduced myself as a parent but didn’t indicate that I had a special needs child. Truthfully, it didn’t seem to me to be relevant; I was just a parent wanting what is best for her children. Although, as a special needs parent we aren’t allowed to think about “best.” By law, we are entitled to “appropriate” so the word “best” is far out of our reach. But, that wasn’t on my mind at all as I settled into my seat and made polite small talk with the woman next to me.
The budget conversation inevitably included discussion of special education. There was a moment when someone suggested that they used to keep a financial cushion because the boiler could explode. Now you had to maintain a cushion because you never know who could move into your district. This was followed by a comment from a school board member, “We have a $50,000 child we have never even met.” I guess she is referring to a child whose needs are so severe that they have an out-of-district placement. The district pays for the child to go to a school that can meet their needs since the district, for whatever reason, is unable to “appropriately” educate that child.
I didn’t say anything, my heart was beating too fast, my skin was too prickly and there were tears in my eyes and voice. What I would have liked to say is: “A $50,000 child you will never meet? This probably means that this child’s parents have never really met him or her either. They don’t know what their child’s favorite color is, or what they would like to be when they grow up. If a child’s needs are severe enough to be placed out of district, chances are that child will never be a grown up, but a child forever. I bet that child doesn’t speak, maybe isn’t mobile. These kids are unpredictable, don’t always sleep through the night, require a small army of specialists and doctors.”
As a special needs parent I often feel like we are taking more than our fair share. It is clear in the glares of airline passengers or even glances over magazines in doctors’ offices. I get it, my kid is ruining your peace and quiet. Special needs parents have to develop a thick skin. That’s been a little easier for us because Mae is totally unconcerned about whether or not someone wants to read quietly. If she wants to jump and sing at the top of her lungs, she will do so with abandon…It is her blessing and her curse.
Mae had a rough start to the week at school, prompting a staff member to say to Colin, “You are lucky she is cute.” Later, when he told me about it, we were laughing, “lucky she is cute? Or else what?”
When you have a special needs child, people say ridiculous things to you all time. My favorite is: “I don’t know how you do it.” As if there were some sort of roadside dropbox I wasn’t taking advantage of. She is my child. I don’t spend my days wishing I could find some reasonable alternative to being her mother.
So, I have been reminded yet again this week how important it is to watch our words, and to remember that you have no idea what someone’s story is just by looking at them. I don’t believe that any of these people meant to do any harm with their words. I also know that whatever people may see when they look at my child is different than what I see. She may be a budget line item to some, or a cute nuisance to others. To me she is magic and fierce. She has an amazing belly laugh and can jump higher than anyone in our family. I don’t know what her favorite color is, but I know she hates jeans. Chances are she will never be an astronaut, an actress, a fairy princess or a veterinarian, but she is my child and she always will be. It is a lesson to tread lightly on ground we have never walked. You never know when you could unwittingly cause pain.